Local Woman with Multiple Sclerosis Keeps Positive Outlook

Ask anyone who's been diagnosed with a disease that requires long-term treatment and a lifetime of managing that disease and they will tell you that it has dramatically changed their lives, most often with devastating results. How well and how long one lives with the disease can often be determined by attitude.

Kelley Spilios was raised in Uniontown and now lives in North Canton. She was diagnosed with multiple sclerosis (MS) at age 19 and has lived with the disease for more than 25 years. While her physical and cognitive conditions are steadily declining, her attitude toward her life is as strong as ever.

“It really comes down to making a decision,” Kelley said. “You can make the decision to be sick or not. I’m really pretty lucky because it could be so much worse. I really do have it good,” she said.

When Kelley was about 16 years old, she started feeling something like pins and needles in her legs. Whatever the feeling, she knew it wasn’t right. The doctors she went to said they couldn’t find anything wrong with her. Three years later, her family doctor suggested she may have MS. She was told to quit work and drop out of college. She did what she was told for about six weeks, until she couldn’t sit around anymore.

“I told my mother one day that I couldn’t just lay around so I went back to college and graduated and eventually got married. And, I worked as a social worker for a number of years,” Kelley said.

Last year, Kelley’s symptoms started to get increasingly worse — so much so that she started walking with a cane and then a walker. She has also started using a wheelchair. Traditional medicines are not the most progressive for the disease so she and her husband are looking at a stem cell treatment in Arizona. The cost of the treatment, travel and lodging is close to $11,000. Her husband’s insurance will not pay for the treatment.

Pete Spilios, Kelley’s husband, and her best friend Kandi, are working on a fundraiser to help with the costs of the treatment. The event is scheduled for 6 p.m. to midnight Saturday at the Rafter’s Bar & Grill at Meadowlake Golf and Swim, 1211 39th St. NE in Canton.

The couple hopes to travel to Arizona so that Kelley can participate in a treatment that takes stem cells from her own fat cells and then reintroduces those cells back into her system through an epidural, inhaling or through a regular IV.

“We’ve researched the doctor, the procedure and the clinic and could not find any controversy or anything negative,” Pete said.

“MS is a wicked disease and just being vertical and able to drive after 25 years is phenomenal,” he said. 

Kelley has experienced muscle weakness, extreme fatigue, depression, spasticity and diminished cognitive abilities. Doing simple activities such as going through the mail or staying organized is becoming increasingly difficult. Kelley can no longer go to the grocery store and can’t spend time with friends like she used to.

MS can also take its toll on hearing, vision and even the ability to swallow. Kelley went through a time when she had to eat pureed foods because of her problems with swallowing. She is hoping to gain some relief with the new treatment.

“I’d like see improved mobility and be able to walk without a cane or walker. And, I’m hoping that the treatment will improve my cognitive abilities even just a little bit,” Kelley said.

Throughout her life, Kelley has worked with children services and disadvantaged teenagers. She was the youngest person in the drug trials for Avonex during her 20s and traveled around the country as a guest speaker. Two of Kelley’s goals are to find a way to beat MS and to help others beat MS.

“I am still just the happiest person. I feel so blessed,” Kelley said.

At Saturday's fundraiser, there will be live entertainment with two DJs and a local comedian along with a silent auction. Tickets are sold at the door and include a chicken dinner and the entertainment. Those interested in donating to help Kelley get the treatment she is seeking can visit www.giveforward.com/nocaneforkelley or stop by any Huntington Bank and write a check made out to “Pete Spilios” with “Kelley Spilios Fundraiser” written on the memo line. Or, stop by the fundraising event.

“All of the items for the fundraiser have been donated, so 100 percent of the proceeds will go to help Kelley get this treatment,” Pete said.

While each person is affected differently, multiple sclerosis is a disease that affects the brain and spinal cord resulting in loss of muscle control, vision, balance, sensation and numbness. The nerves of the brain and spinal cord are damaged by the immune system, making MS an autoimmune disease. For more information, visit www.nationalmssociety.org or www.webmd.com/multiple-sclerosis/guide/what-is-multiple-sclerosis.